I read somewhere recently that every time you remember an event, you aren’t recalling the actual event. Instead, you are recalling the last time you remembered it. That killed me. Does that mean every time I think of you, I am just thinking of the last time I recalled a memory of you? There is something so removed, so aloof, so unnatural about that. I want to believe that each time I think of you, I think of you exactly as you are, as you were, just you.
People tiptoe around you now. Not everyone, just most people. They act like we should pretend we have forgotten because it is easier than recalling you and your death. I hate it. I want to remember you, daily. You were and still are the biggest influence in my life and that hasn’t changed just because you aren’t here. I want people to ask about you. I want them to the fun, beautiful, bright memories of you that we all share. I want them to acknowledge you. There is no elephant in the room. You are gone. Your influence, however, will never be gone, not for me.
You might just be my favourite and most inspiring subject.
I guess I have been dealing with the fact that you haven’t met him and that you never will. That is a real shame. He has that annoyingly brutal honest bluntness that you had. He also has that absurdly self-deprecating humour that you adored. He’s not what I expected but he is exactly what I think everyone wants in another human. He has your tenderness. You would like him. I think, in time, you would love him. I don’t even know why I am bothering to detail all of this to you. You see it all now. You’ve seen him, seen us.
To quote you ‘I miss ya kid’.
Love and love again,
I planned each chapter meticulously. Every plot and goal carefully detailed and dictated. It would be a masterpiece, a best-seller. It couldn’t possibly fail, not with this level of attention to detail. There was only one part of the narrative I couldn’t control. One detail I couldn’t write into the climax. The great loss that was my mother would be a bitter, unexpected tragedy, so everything else had to perfect, to allow for this huge demise. I would finish my PhD exactly as planned, on time. It would be a portfolio of meaningful, scientific, impactful work. I would find a job with equal meaning, making a difference, fixing things to make up for the one thing I couldn’t fix. I would always strive for more. Pushing myself to be better, stronger, more determined. I would marry at a reasonable age to a reasonable man, a man with good morals, a man my mother would approve of. I was ready for all of it. I was almost ready to publish when you disrupted my entire plan. I didn’t write you into my story. I didn’t have room for you. Every character had already been accounted for. I didn’t think there was room for you. What I didn’t realise at the time was, you weren’t a character I would write-in last minute. You, you were the entire story, the entire plot. Now, the story I didn’t write or plan for is the only one I care about and you and I are the main characters. And now, none of the other details, storylines or plots are planned. The only thing we can count on, is us, You and I. For the first time in my entire life I am unsure of everything, everything but you.
I tell him all about you. I laugh at your attempts to set me up with a Starbucks barista who really just wanted to take our order and never see us again. I cry at your pain. It is all mine. Your moments of pure joy, were my moments of pure joy. Your pain cut through us both like a sharp knife. I tell him so I won’t forget. I tell him because one of the saddest things in the world, to me, is the fact you will never meet him and he will never meet you. He would make you laugh. He does that self-deprecating, underdog thing you would have rooted for. He would have admired you in every way because you are the literal meaning of the words ‘strength’ and ‘determination’. You would have debated and playfully argued. He would have feared you. And loved you. I tell him about your past. I tell him about your journey. I tell him about your final destination but I tell that story with tears strolling down my face and onto his.
I tell him because with each passing day you get further from me.
I tell him because I am scared.
More than anything I am petrified that one day I will wake up and I will forget how you would sip your tea.
I tell him because you were mine and now he is too.
I sat on the old park bench with my two incredibly lazy dogs and people-watched. I saw you run around, laughing, smiling with your adorable son. I’m guessing he is around four. Both of you, in hysterics over your game of peek-a-boo. It made me laugh. It is one of those perfect sights that makes a young woman like me think of herself as a mother one day. It also made me think that you must need boundless energy to keep up with your giggling little munchkin. As soon as he caught sight of my little balls of white fur he ran straight over, you, a few footsteps behind, trying to keep up. He insisted on hugging both of them and asked me if they were twins. Then as I was responding to his many questions he coughed, abruptly and intensely. You were unfazed and apologised insisting he isn’t contagious.
He has “Cystic Fibrosis” we both stated in unison. We spoke about Orkambi and research and you told me about how you encourage as much physical activity as possible. You were so optimistic and enthusiastic, it was contagious. You made me think of how different life is now for people being born with Cystic Fibrosis. A far cry from my mum’s birth and odds in the seventies. You brought me back to a place I hadn’t been in a while. I am in this constant battle of emotions. I am torn between feeling resentful that my mum never lived to avail of the numerous treatment options out there today and also incredibly grateful that so many others lead such different lives and will have different fates. Most days, I focus on the positive. The endless emerging therapies and the stepping stones leading to an eventual cure. Some days, every so often though, I wallow. I wallow in that dark place where those options didn’t exist. Where the light at the end of the tunnel got further and further away from us and every passing day our hope diminished. You know what though? That’s okay. Grief is a complex thing.
Thank you, kind stranger, for the reminder that now, there is so much light. So much hope. Even in my dark spaces, people like you interrupt my solitude with your bright lights and music. I hope your son has a life filled with light.
In the wake of Donald Trump’s rise to power I have been forced to confront my own feelings on some things. Everywhere I go there is some mention of reproductive rights. Something, somewhere always acts as a trigger. Websites chiming in, celebrities tweeting their own personal beliefs, a statement T-shirt on a crowded college campus, news headlines, a friend absent-mindedly discussing his overt views over drinks on a Saturday night, blaring radio segments, magazine covers, trashy red-top papers with misleading headlines, it doesn’t cease. Everyone has an opinion and most are forcing theirs down my throat. I sat in a crowded room, each of them bickering casually over their own thoughts and feelings. I reached into my bag to get my phone and instead met some old tablets. My mum’s tablets. Then it occurred to me that I hadn’t used this bag since before my mum’s passing. I held them tightly in my hand and my breath became shallow. Must. Keep. It. Together. Just as Birdy’s voice began to wind down I was transported back.
I sat in the kitchen of their house. It hadn’t even been four months since I had faced my greatest challenge. They had two children, their first has CF, now in her thirties, fit and healthy. Their second was lucky enough not to receive two copies of the gene. They spoke of their experience with their first child. They had never even heard of the disease. They faced shock, sadness and a steep learning curve. They spoke about all of it in such a ‘matter of fact’ way, emotions of their distress clearly in the past. They then spoke of their second pregnancy. This was when the tone changed. They tell me it was then that they realised they were pregnant with a ‘decision, not a baby’. My heart sank. I felt sick. I felt the colour drain from my face. I was already upset but now I was just disgusted. Did they really just say that? I had no idea how to feel. I was outraged, horrified, hurt, bewildered and just outright irritated. How am I supposed to respond to that? I zoned out. I was too busy immersed in my own grief and misery to defend my personal opinion. Then, they stated in a rather aloof ad stolid way ‘you too Christina may be faced with such a decision, since you carry the gene’.
Please allow me to set the record straight: I will never be faced with such a decision. A child’s life is not a decision for me. It isn’t a choice or something I can play with. Any child of mine will be loved and cared for regardless of their health or their life expectancy. How dare you confront me with your ideals.
I understand everyone has a journey and I don’t understand that journey unless I have lived it myself but this is my opinion. Please don’t talk to about my future. I believe in being informed, prepared and educated on these things but I certainly don’t believe I have a say in any of it. I don’t want a choice, not in this scenario. Unless I explicitly ask for it, I don’t want your advice or thoughts.
My mother was one of those painfully optimistic, glass half full kinda people. She could lose a limb and a minute later would immediately comment on how she has three others. I tried to channel that for years. I succeeded for many actually. A few weeks ago as my colleagues were discussing Christmas and I felt bitter. The kind of bitterness you can feel churning in your stomach. It is a disgusting feeling, one my mother would never approve of. You see, on Christmas day last year my gorgeous mother lost her battle to Cystic Fibrosis and on that day I vowed to forget Christmas. My mother loved Christmas cheer. She loved being inside under a fluffy blanket as the frost covered the road outside, she loved the hot drinks while she read her favourite book and the twinkling of the Christmas lights late at night. I loved all of those things too. She loved the streets of NYC on Christmas eve and battling her way through Macy’s to get to the toy section.
Last night I sat down with my dogs and a mug of tea from my mum’s favourite mug. Outside the moonlight hit the frost to create this glittery sheen. The beauty of it hit me hard. What am I doing? I love Christmas. She loved Christmas. Do I want to become one of those people who spends their life avoiding something beautiful because it hurt me once before? That is like vowing never to love again once you have had your heart broken. I don’t want to be that person and my mum would never be that person. Someone told me recently it takes nothing to forgive and forget but it takes constant effort to feel bitter every day. That resonated with me. I don’t want to feel bitter about Christmas. I want to laugh, I want to enjoy, I want to experience like my mum would want me to. I want to stick out my tongue in Time’s Square to catch snowflakes. I want to (badly) sing along to cheery Christmas tunes. I want to be what she was. I want her ridiculous optimism. I want her. That’s not going to happen so this is the next best thing. Because, the thing about my mum was. She suffered. Damn, she really suffered, but you know what? She might just have been the happiest person I had ever known. She was warm and fuzzy. She was a warm hug. She was a shelter in the pouring rain. She was home.
I want that.
One day, I want someone to say that I was the painfully optimistic, happy lunatic they admired.
For now, maybe I will hang those Christmas stockings. All three of them.
‘ It’s too cold outside for angels to fly’.
Is this letter three or four? I can’t bring myself to keep track because with each letter a huge chunk of time has passed. A chunk of time in which I haven’t seen your face or heard your voice. How crazy is that?
I’m angry today. It’s the kind of anger that’s tinged with sadness though so it isn’t very intense. I thought when you left this earth that all the uncertainty would go with you. Isn’t that naïve? You left and so did my opinion on almost everything. I’m stuck in this place I never thought I’d be. The fence. On all things. What am I doing, mum? If there was ever a time in which I desperately needed your guidance it is now. You left me and soon after, so did he. Now, I stand here, shocked like I’ve been in some tragic accident. Winded and bleeding. You see, at first I thought you threw me a lifeline. A loud, unhinged, fun, glittering lifeline. It was right there, handed right to me and I grabbed it with both hands. I was grateful, relieved, I was alive again. I could hear the music and see the blinding lights. I laughed until I cried again and remembered the concept of pleasure.
But then, suddenly, I saw the lights flicker and the music that I once enjoyed seemed brash and a little too loud. I hadn’t anticipated it. You see I thought that it was my life boat, I thought it was the glue that would piece it all back together. I thought, just maybe it was the solution. I realise now that was naïve. I always have been a romantic though, you know that. I wanted this to be it. My silver lining. Now, mum, I’m worried my silver lining will rain on me. I fear that this silver lining is capable of hurting me just as much as the rest of it. Maybe I’ve just been lucky until now. I just don’t know. Are you watching it all? Have you seen the entire thing? Have you seen the exciting beginning and the delicate and sweet climax? Have you seen the end? Is there one? Who am I mum? Is this really me? I pretend to have a hold on it all but it’s slipping away like sand through my fingers.